Friday, February 25, 2011

Mary and I are at our local hospital right now. She is in for long term seizure monitoring. All of her EEGs since she came home have shown zero seizure activity, but she is on 3 seizure meds and she has 4 different types of 'seizures.' Go figure. So we are trying to get to the bottom of this.
Anyway, she is trooper, as usual. However, she is more 'vocal' than before and more demanding. Using her DynaVox, Mary has done some great communicating. Her school wants me to catch it on video, but how do you catch spontaneous communication?
While she was getting all the electrodes glued to her head, the doctor had my attention to get some information. Mary started to get mad and called out 'Mom' 3x. I kept trying to assure her I was with her and everything, but the darn doc kept taking me away from her. Then she used her DynaVox again (on a different page) to ask "where's my mom?" At that point she was vocalizing (not a regular occurrence) and quite upset, so I ignored the doctor and payed attention to my girl.

Mary's new hobby - painting!

Another situation happened last night. Mary had just finished painting. She just told me 'no' she did not want to get back in bed. I asked a nurse to come in the room for a little while so I could go get dinner. I told Mary that the nurse will sit with her and Mary could get back in bed when I got back. When I returned 20 minutes later, Mary was in bed. Mary had used her DynaVox to tell the nurses (another one came in) a whole bunch of things - she needed suctioning (numerous times), she needed to get cleaned up, and she apparently insisted that they should pick her up.
I wonder what she'll say today?